3 Questions to Joel Beetsch, Vice President of Patient Advocacy, Celgene

eyeforpharma asked Joel Beetsch, Vice President of Patient Advocacy at Celgene, 3 questions about how patient centricity is changing the landscape of clinical trials.

Joel will recently spoke at eyeforpharma's Patient-Centered Clinical Trials Conference on 4-5th September in Boston.

Question 1: What is the source of your personal inspiration in improving patient engagement in your work?

Our company is very open to having patient advocates involved in our trial process. I come from a clinical trials background and I have seen examples where companies did use  and didn’t use patient insights. We do our best to involve patients in our whole process. However, there are better opportunities to incorporate them earlier.
Question 2: Based on your experience, what is the ideal role and responsibility patient advocates should have in clinical research?
There are significant opportunities to involve the voice of the patient across the entire spectrum, as part of endpoint selection and during protocol development. Secondly, patients and patient advocates can get involved as part of patient-reported outcome (PRO) development and selection. Thirdly, they can be involved in trial results interpretation across all phases of a trial.
Question 3: In terms of getting closer to a process of patient-centered drug development, what will be key priorities for the next 2 years?
There are three key priorities: first, a focus on patient friendly and patient-focused endpoints; secondly, further identification of patient-reported outcomes and quality-of-life metrics; thirdly, there is a big emphasis on data sharing throughout the overall trial process. This can shorten the process – and saves money – and helps us avoid having to collect unnecessary data from patients. PhRMA and EFPIA published principles around sharing data around clinical trials that were instituted on January 1 2014 (see Principles for Responsible Clinical Trial Data Sharing). Also, another data sharing project, the Project Data Sphere initiative, enables us to share, integrate, and analyze our collective historical cancer research data in a single location, so researchers can share the control arm of phase 3 clinical trials.

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